The MEA received a letter from the Secretary of State for Work and Pensions.
The ME Association’s website contains a template letter for your use, -
Write to your MP about the recent announcements on Welfare Reform
May 29, 2025
On Tuesday (18.03.25), the Rt Hon Liz Kendall MP, Secretary of State for Department of Work and Pensions (DWP) announced the governments plans for welfare reform.
Over 120+ organisations and charities are concerned that these changes, especially the decision to change the eligibility criteria for PIP and make it even more difficult to obtain, will have a devastating affect on disabled people and the communities they represent, pushing many into financial hardship.
We know from a Scope report (2024) that life costs more for disabled people. Many people who have ME/CFS and Long Covid, which can both be a disabling and very debilitating condition already live in poverty as a result of these extra costs. Therefore the impact of disability benefits cuts would be disastrous.
The ME Association is actively challenging the government’s proposed welfare reforms and has launched a major project to defend the rights of people with ME and Long Covid.
We will shortly be publishing a formal position statement, meeting directly with key policymakers including the Minister for Disabled People, and launching a national survey to gather vital evidence from our community.
This work is a priority for the charity, and we’re committed to ensuring the specific needs and experiences of people with ME and Long Covid are clearly represented and heard.
Write to your MP
Ella Smith, Welfare Benefits Adviser to the ME Association has kindly drafted a template letter which can be used to write to your MP. Please consider writing to your MP (List of Herefordshire and Worcestershire MPs) to express your personal concerns using our Template Letter available for your use.
The ME Association (MEA) wrote to State for Work and Pensions.
MEA writes to the Rt Hon Liz Kendall,
Secretary of State for Work and Pensions - The ME Association
March 17, 2025
Summary
- The ME Association (MEA) raised concerns to Liz Kendall about press reports indicating cuts to welfare benefits, stricter PIP eligibility, and changes to ESA assessments, which would negatively impact people with fluctuating conditions like ME/CFS and Long Covid.
- Despite years of collaboration with the DWP, assessment procedures for people with fluctuating conditions remain inadequate, often leading to unfair denials of benefits.
- The MEA calls for the government to reconsider proposed welfare reforms, as they could push individuals with ME/CFS into poverty and debt, and urges consultation with medical charities before implementing changes.
15 March 2025
Dear Secretary of State
Welfare benefit reform
Along with representatives from several other medical charities that represent people with fluctuating and long term medical conditions (examples include AIDS/HIV, inflammatory bowel disease, multiple sclerosis and rheumatoid arthritis), the ME Association (MEA) has worked with the DWP over many years to try and make the eligibility criteria and assessment procedures for sickness and disability benefits more fair and effective for this group of people.
In particular we have taken the view that where people are clearly unable to work they should be supported by the benefits system and not forced into trying to obtain work that they cannot do and that employers do not even want to offer to them.
Equally, where someone is or may be able to carry out some form of work there must be far more incentives for employers to take on people who may require periods of sick leave and modifications to their duties in order to work along with flexibly in the benefit system to allow for a flexible or part time return to work or a failed return to work.
For your information I attach of copy of the very comprehensive report that the DWP Fluctuating Conditions Group produced on the challenges facing people with these conditions when it comes to applying for work related DWP benefits and the use of the Work Capability Assessment – which we understand will form part of the government review.
Unfortunately, despite our efforts over the years, which have also included working with Professor Malcolm Harrington on his major review of the Work Capability Assessment, the procedures for assessing and claiming ESA and PIP are still not fit for purpose if you have a fluctuating medical condition – where the severity of ill health and disability often varies throughout the day, from day to day and from week to week.
As a result of having assessment procedures that do not meet the needs of people with fluctuating medical conditions, many people with moderate or severe ME/CFS, and Long Covid, are still being refused sickness and disability benefits. They are only succeeding when there is a reconsideration of their case or they go to appeal - where the high rate of success helps to confirm that the initial assessment procedures are just not working.
People with ME/CFS and Long Covid are therefore fearful and frightened by the press reports this past week which indicate that the government is about to announce major welfare benefit reforms and spending cuts which will include stricter eligibility criteria for PIP, a reduction or freeze in the level of payments, changes to the ESA Work Capability Assessment, and reductions in payments relating to Universal Credit.
We are also surprised and disappointed to find that medical charities representing people with long term conditions have not been consulted about these changes.
The purpose of PIP is to provide people who have significant problems with care or mobility with the financial support which helps them to improve their quality of life and in some cases with the costs of returning to some form of employment - something that the government is obviously keen to encourage.
Making it even more difficult to claim PIP, or reducing the financial support it provides, is going to have a very detrimental effect on people with ME/CFS and will result in some of them being forced into poverty and debt.
We are therefore calling on the government to listen to people with fluctuating medical conditions like ME/CFS and urgently reconsider the adverse effects of making these changes to PIP.
At the same time we do obviously recognise the case for reforming some aspects of the welfare benefits system. So we are very willing to collaborate with the DWP to achieve meaningful change that will help people with ME/CFS. However, this must involve understanding and addressing the diverse needs of people who are ill and disabled, and not with cuts that could undermine their security and dignity.
Thank you for considering our concerns.
We look forward to hearing from you and hopefully working with you on a benefit strategy that will help people with fluctuating medical conditions who are capable of returning to work and not penalise those who are genuinely unable to work.
Yours sincerely
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS
Regarding Welfare Cuts The ME Association.
April 3, 2025
On the 15th of March, 2025, Dr Charles Shepherd, MEA Hon. Medical Adviser, wrote to Rt Hon Liz Kendall to express the ME Association's deep concern around press reports indicating she would announce cuts to welfare benefits. This letter was sent prior to the the parliamentary announcement and the release of the Green Paper on 18th March.
The ME Association intends to send a follow up letter to Rt Hon Liz Kendall and provide a response to the Green Paper consultation.
On the 3rd of April, the DWP replied - as follows:
Dear Dr Shepherd,
Thank you for your recent correspondence about benefit reforms.
The Pathways to Work: Reforming Benefits and Support to Get Britain Working Green Paper was published on 18 March 2025. The consultation sets out plans and proposals to reform health and disability benefits and employment support.
The Green Paper is an important staging post on a journey of reform, building on the vision and approach set out in the Get Britain Working White Paper in November 2024. It sets out our vision, strategy and proposals for change.
The Government wants to improve and refine its plans by consulting on certain measures as described within the paper. It is committed to putting the views and voices of disabled people and people with health conditions at the heart of everything it does.
The consultation - Pathways to Work: Reforming Benefits and Support to Get Britain Working - can be responded to via a Microsoft Form using the following link: Green Paper Consultation
By emailing [email protected] or; by post at: Pathways to Work Consultation, Disability and Health Support Directorate, Department for Work and Pensions, Level 2, Caxton House, Tothill Street, London, SW1H 9NA.
Further details about the Green Paper can be found by accessing the following link: Information on Green Paper
Yours sincerely,
Head of the Ministerial Correspondence Team
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS
- GOV UK: Biggest shake up to welfare system in a generation to get Britain working | 18th March 2025
- DWP: Pathways to Work: Reforming Benefits and Support to Get Britain Working | March 2025
- MP Jo Platt: Parliamentary Question to DWP: Employment: ME/CFS and Long Covid | 17th March 2025
- The ME Association: MEA signs Scope’s open letter to the chancellor regarding welfare cuts | 18th March 2025
- Disability Rights UK: Green Paper published – £5 billion cuts proposed by scrapping the WCA and changed PIP assessment | March 2025
- Guardian: Councils and NHS could face millions in extra costs due to disability benefit cuts | 24 March, 2025
- Disability Policy Centre: Welfare reforms likely to deliver no significant savings in “all pain and no gain” scenario, according to new analysis. | 24 March, 2025
- The ME Association: Science Norway: Almost no ME/CFS patients return to work | 25 March, 2025
- GOV UK: Government to listen, learn and deliver as consultation on transformational welfare reforms begins | 7 April, 2025